You may hear a lot of advice from many different sources on how to treat sarcoidosis. It probably feels overwhelming at times – especially when a lot of this advice is contradictory. Your doctor doesn’t necessarily know everything, so doing your own research is an important step in becoming an empowered patient. However, it is important to use credible sources, and it is especially important to look out for “miracle cures.” Miracle cures are exactly what they sound like. They can be a step-by-step program, a supplement, a new diet plan, or any new fad that an individual or an institution are pushing as a sure-fire way to cure your chronic illness in no time. These “cures” are often under-researched and expensive, and there is a significant risk that they cause more harm than good. These are some of the “miracle cures” that have been discussed in the sarcoidosis community:

Stem Cell Therapy

Stem Cell Therapy is one of the most enticing new fads in the medical world. There are hundreds of stories out there about people suffering from debilitating illnesses who underwent stem cell therapy and suddenly felt as good as new – sometimes as quickly as the following day. However, there is no shortage of reasons for doctors to be skeptical about stem cell therapy.

There is no doubt that stem cell therapy is an interesting concept. The treatment involves combating a person’s unhealthy cells with another person’s healthy cells. Theoretically, the strong, healthy cells should target the unhealthy cells and reduce their harmful effects. Sounds pretty logical, right? Unfortunately, cures for chronic diseases are rarely that simple. The bottom line is that there simply isn’t enough sound research being done on stem cell therapy as a cure for diseases like sarcoidosis. In fact, institutions that administer stem cell therapy often use their patients’ immediate hopeful reactions as advertisements, and then they neglect to follow up with the patients to see if their therapy really worked long-term. The American Lung Association put out a statement about stem cell therapy, cautioning patients to abstain from participating.

Because of the potential for harm, the lack of any proven benefit, and the high fees that many of these programs charge, we caution you not to participate in these or any other unauthorized or unapproved stem cell administrations, unless independent credible, reliable, and objective sources of information are available to substantiate the information and claims being made.

American Lung Association

Marshall Protocol

Trevor Marshall came up with a treatment for chronic inflammatory diseases like sarcoidosis that consists of five seemingly simple steps. The first of these steps is to take a minimum of 40mg of olmesartan every 4-6 hours, which is a very high dosage. Olmesartan is not a drug that is commonly administered to treat sarcoidosis – in fact, it is used to treat high blood pressure, which is not one of the more prominent symptoms in sarcoidosis. Marshall protocol also requires limiting one’s Vitamin D intake, which means avoiding foods that are rich in Vitamin D as well as sun exposure. Vitamin D irregularity is common in sarcoidosis, but it is certainly not the root of the problem. However, Marshall Protocol bases its treatment on the belief that sarcoidosis is caused by an excess of Vitamin D paired with infection. We do not know what exactly causes sarcoidosis, but we do know that it is characterized by the formation of granulomas, not infection or Vitamin D irregularities. Focusing solely on these symptoms in treatment of sarcoidosis is missing the mark. Marshall Protocol is an expensive treatment, and there is no real evidence on its efficacy and we cannot be sure that it is harmless.

Aden Protocol

Similar to Marshall Protocol, Aden Protocol is a poorly researched “miracle cure” that probably causes more harm than good. Aden Protocol was invented by Danielle May, who promises that by following her five-step program, patients can rid themselves of sarcoidosis symptoms in two weeks. The program claims that shifting a chemical imbalance in the abdomen is the key to relieving sarcoidosis symptoms. However, most sarcoidosis cases have pulmonary involvement, and very few are based in the abdomen. The program relies on nutritional tips and deep breathing exercises to alleviate sarcoidosis symptoms. Some people may experience relief after implementing the Aden Protocol due to the placebo effect, however, sarcoidosis will not be cured simply by following this program, and it could worsen if not treated by a doctor. Be cautious of at-home remedies and treatments like this, for they could have harmful effects and also deter you from getting the treatment you really need.

 

Miracle Mineral Supplements

Some distributors have introduced Miracle Mineral Supplements (MMS) as a “cure” for multiple conditions and diseases like cancer, autism, the flu, and even rare diseases like sarcoidosis. The wide span of conditions that distributors are claiming MMS cures should be a red flag on its own. Autism, the flu, and sarcoidosis could not be more different, so how could they possibly all be cured by the same product? Furthermore, the FDA warns consumers to stay away from MMS because not only does it thwart a patient from starting helpful treatment, but the product itself can be dangerous and make patients even more sick. When mixed according to package directions, the product becomes bleach, which is incredibly dangerous and often fatal to consume. This is yet another product on the market to give desperate, vulnerable people false hope in exchange for money.

Sadly, there are a lot of people in the world who want to capitalize on the fear and desperation of sick, vulnerable people. Even the most intuitive people are at risk of falling victim to a “miracle cure” scam. Just remember, if these cures really worked, they would be widely embraced by the medical community. Your doctors want what’s best for you, so if they are skeptical about a certain treatment, you should be too. Unfortunately, there is still a lot of work to be done before we can find the real cure for sarcoidosis. However, we would rather find a cure that is thoroughly researched, safe, and effective than one that could have adverse effects. Learn more about how FSR is advancing research that will lead to new and improved treatments for sarcoidosis through our Disease Model Initiative.

Tips for finding reliable information about sarcoidosis and treatment options:

There’s a lot of misinformation about sarcoidosis, especially online. This can make finding reliable information on the disease and treatments difficult. Here are a few tricks to help make sure you’re getting reliable information:

  • Check the end of the website domain: if it ends in .gov, .edu, or .org, you know the website is being run and monitored by either a government agency, and educational institution, or a noncommercial organization. Both .gov and .edu resources are reliable. The page is endorsed by the institution and is not the page of an individual presenting their personal opinion. On the other hand, a .org website may provide biased information if the organization has a specific agenda they are trying to promote.
  • A .com web domain does not necessarily mean the information is biased or incorrect, it simply means you should be careful and verify information you find with another web resource or with a medical professional.
  • Check who wrote or contributed to the content on the page: most reliable pages will site the author of the content. It is best to stick to content written by medical professionals or pages that cite resources written by medical professionals.
  • Websites of medical institutions are reliable resources, but don’t always have much detail since sarcoidosis is such a rare disease. Website of foundations and organizations solely committed to sarcoidosis, either in research, patient care, or treatment, will usually have the most information.
  • When in doubt, always ask a physician who has experience working with sarcoidosis. If you are looking for a physician in your area, check out our Physician Directory